He floated, body still, dangling, as his mom watched from below, his dad waiting his turn.
Living by their newfound determination to continue doing the things Garrett could do despite his disease, during their trip they had already kayaked with whales, biked down the Freund Canyon Trail, rafted down the Wenatchee River, and now they were freefalling through time, emotions, reality. Their hope was renewed.
Garrett spent the next few months on his hands and knees, up against his hallway walls, running and collapsing, jumping and crawling, until the first day of ninth grade, a day he had been dreading all summer. High school was a time to impress the girls, hold their hands in the halls, fit in. A wheelchair allowed for none of those things.
As Linda drove him to school that day, wheelchair in the trunk, Garrett stared out the window. He didn’t say a word. He spent his first few weeks worrying about how he would maneuver through school—a campus with four levels on one side, five on the other, hallways packed with rambunctious teenagers. His thoughts became less and less about schoolwork and more about how he would make it from one class to the next.
Determined to stay as cool as possible, to remain as accepted as his disease would allow, Garrett tried in every way he could, with everything inside of him, to look “normal,” to keep his body from giving him away, from taking away his image, from stealing his high school years.
Leaving his wheelchair, his prison, in class on days his body felt strong, Garrett would walk backwards down the halls, hands on the walls for support, facing his friends, talking and laughing as they made their way to class. He would fight it in class, fight it at home, fight, fight, fight.
For Spring break that year, Mike and Linda decided to give their son a break from fighting with a trip to Belize—a place they had never been before—maintaining their philosophy, “Never visit the same place twice.” He could float in the Caribbean Sea and lie on the white, sandy beach. But, as always, they found something more. Despite Garrett’s limitations, they found an adventure.
Maneuvering the wheelchair in the sand was nearly impossible, so one afternoon they left their small cabin on the beach and took a boat to a nearby deserted island, Silk Caye, where Garrett leaped from his wheelchair, crawled through the sand to the water, and strapped on a pair of goggles and fins. As Linda walked to the water’s edge, she glanced at the wheelchair, abandoned in the sand like a sunken ship, tilted and no longer needed, at least for the moment.
In her optimistic mind, where reality easily became make-believe, that wheelchair would stay there forever. She would pretend it away, smile the surgery from existence, laugh Dystonia from their lives. Just like the wheelchair, they would abandon it all.
She and Mike swam hand in hand with Garrett, away from shore and around the island, away from it all. They pulled Garrett through the water, admiring bright fish and colorful coral below, the sun’s heat on their backs. This was their reality for now, but if all went well, everything would change. The surgery could fix everything.
And while, in their minds, it had to, they knew there was a chance it could fix nothing. If it didn’t work, if Dystonia won again, this could be one of Garrett’s last adventures, one of their last adventures as a family, their “last hoorah.” They were determined to make the best of it. They snorkeled and spent hours at the ice cream shop and beach bars, befriending tourists and locals to the area.
When they left paradise and returned home, reality was waiting to greet them. Surgery was one week away. Linda cried to her friends, and the days leading to surgery, she and Mike sent Garrett’s mind as far away from reality as they could with endless games of Rock Band on the Xbox with his friends, nights out to dinner, and sightseeing in Boston where the surgery would take place.
On the day of surgery, dressed in blue smocks, fear living inside, Mike and Linda held Garrett’s hands as doctors placed a metal “halo” around his head to keep it still, to locate exact areas of his brain. He was fifteen, but the way his blue eyes searched his mom’s face, the reassurance for which they begged, reminded Linda that he was still her little boy. She plastered a smile on her face, willing her eyes to communicate, You’re going to be just fine.
And Mike believed it. Garrett, listening to his iPod, had sung “Beautiful Day” by U2 after being admitted to the hospital.
The words of the song, of falling skies and good days slipping away, circled Mike’s head, and he listened.
The sky was not falling today. This was a good day, a beautiful day—a day that would give Garrett back his life.
“Everything’s going to be okay,” Linda said, just in case her expression, the message in her eyes, was not clear enough, then she squeezed Garrett’s hand and left the room.
“We’ll see you later,” Mike said, smiling. “Good luck.”
9
During the five-hour surgery, Mike and Linda roamed halls, paced the floor. In a deli across campus, Mike calmed his nerves with a big Italian dish while Linda drank hot chocolate and chicken broth, the only two things she knew her nerves would allow her to keep down.
They spent most of their time in Garrett’s empty hospital room, looking out the window at the highway packed with cars coming and going between New Hampshire and Boston.
Everything will be fine, Linda told herself. They will take good care of him. He’ll be okay. A pager in her hand buzzed every so often with updates, confirming her thoughts.
“We are starting surgery now,” a nurse working with Dr. Sharma texted after they took a CAT scan of Garrett’s brain and merged it with results from a previous MRI, creating a perfect map of the area where they would place the leads.
They shaved and numbed his head before starting to drill. Garrett didn’t feel a thing. For perfect placement, doctors asked him questions, challenging his brain, making him move his arms and legs, firing neurons. The sound of it, the noise of his brainwaves, rushed through his ears, a soft static swooshing loudly with each command, every movement.
“One side is done!” the pager announced.
I knew it, Linda thought. I knew everything would be okay.
Fake it ‘til you make it.
A few hours later, another message.
“The other side is done—Garrett did great!”
She could finally breathe.
“You can see Garrett in the recovery room,” the pager said, and Mike and Linda made their way through the waiting area, a small, warmly lit room with a beautiful undersea mural painted on its wall. Linda thought of their trip to Belize just a week before, filled with ocean adventures, possibly their last journey, their last family trip before the unknown. Now here they were, the words Garrett did great on the pager in Linda’s hand. As she glanced at the mural, the ocean, one last time, she smiled at the irony.
“It wasn’t as bad as I thought it would be,” Garrett said, smiling at his parents.
Two days later, brain surgeon Dr. Emad Eskandar surgically placed a pacemaker in Garrett’s chest, wire connecting to the leads in his brain, and recovery was more miserable than he ever could have imagined. He slept through as much of it as he could, waking up to throw up, trying to rest during the most intense headaches he had ever felt. But then it was over, and once again, it was time to wait.
They headed home, where Garrett rested and healed, filled his time with relaxation and schoolwork, and a month later, it was time to see if the surgery worked. The incision had healed, the swelling had subsided, and Garrett went with his parents to see Dr. Sharma and nurse Lisa Paul, who would turn on the device that would determine his future.
They wanted the reaction of a light bulb after a flipped switch—instant. But that’s not how this worked, and they knew it. It could take up to three months for Dystonia to release its hold on Garrett’s brain, which it had been controlling for the past seven years. It was not going to let go easily.
Garrett returned to the ninth grade, in his wheelchair, and waited. He tried almost daily to test his brain, to challenge his body, and
to walk. But just as before, Dystonia won every time.
Until one day toward the end of the school year, a day no different from any other, a day that became the next chapter in his life.
It was the end of Garrett’s geography class, his last for the day, and when the bell freed the students, they gathered their things and made small talk as they headed toward the door.
Garrett stood, held onto the back of his wheelchair and began to push. There was nothing special about that moment, nothing in his body that shouted “Dystonia will not win this time!” He decided that, if letting go caused his leg to jut or his back to spasm, he would just grab the handles and nothing would change. No one would notice. But the moment his hands let go, his legs moved forward, around the side of the wheelchair, and guided him around the room, all eyes on him.
“Hey, I thought you couldn’t walk!” hollered a kid from across the room.
Garrett smiled, beamed, then shouted, “Neither did I!”
He couldn’t wait to show his parents. Linda was outside waiting, as she was every afternoon. In his wheelchair, Garrett pushed through the door on the side of the school building and rolled toward his mom, who got out of the car. He stopped the wheelchair and said, “Hey Mom, watch this!”
He stood up and walked around the car, not a hand on it for support, not a falter in his step. He wasn’t jolting or twisting, and nothing was jutting—his body seemed out of Dystonia’s reach, at least for the moment. With a big smile on her face, disbelief in her eyes, Linda couldn’t help but wonder what the next moment would hold. She wrapped Garrett in her arms, expecting to feel a spasm in his back, an involuntary shake or heartbreaking twitch.
Nothing.
They drove home, Garrett planning how he would tell his father, Linda hoping with all her heart that they had just entered the imaginary, perfectly pretend world she had been creating in her mind for so many years.
They pulled into the driveway, and before she could put the car into park, Garrett was out and walking quickly, normally, toward the door leading into the kitchen of their home. He couldn’t get to his dad fast enough. Linda watched as he walked through the door, and Mike, who was heading toward the kitchen from the other side of the house, stopped the moment he saw Garrett.
“What the hell are you doin’?” he asked, a smile crawling across his face.
“I’m walkin’!” Garrett shouted, arms thrown out at his side as if to say “ta-da!”
Pure happiness turned Mike’s proud smile into a relief-filled grin as he reached out to shake his son’s hand. Garrett had been running or crawling or confined to his wheelchair for so many years that Mike had forgotten what it was like to look at him eye to eye. He didn’t offer a hug for his little boy; he offered a handshake for the man standing before him, the man who had handled his situation with such maturity, such dignity, such patience, and optimism. As Garrett squeezed back, he realized that this was not a congratulatory handshake, this was a welcome handshake—welcome to your new life.
10
Sand-colored dust circled in clouds through hot air as tires of a rustic, flat-bed truck tore through the dry, Cambodian earth. Garrett watched as it made its approach, and through those circles, swirling and climbing, disappearing toward blue sky, he could see the faces of those that reflected his past—the faces of ten people living the way he had once lived; the faces of people whose lives he was about to change.
Some of them, whose legs were nothing but heavy, numb, useless limbs, scooted with their arms, well-defined from years of carrying themselves through life, along metal to the back of the truck as it came to a dusty halt. Others, legs missing from the knee down, just sat waiting, as they had their whole lives, for arms to lift them.
As Garrett helped them down from the truck, one by one, they looked at him with childlike eyes, much like his own that had once scanned the faces of doctors desperate to help. He smiled and they smiled back, a universal language. With the help of his parents and two others from their Globe Aware group, Garrett placed each person in his or her own wheelchair, and while some took off right away, using their arms to push the large bicycle tires on either side of their seat, others remained still, helpless, unable to grasp the idea that they could finally move freely, on their own.
Garrett watched as they circled, then pushed handles and let go, sending these people into freedom. It had been a year since surgery, a year of independence, a year without Dystonia. When he learned after his surgery that he could make a wish through the Make-A-Wish Foundation, Mike and Linda jokingly said, “We’re not going to Disney World.”
Garrett had never been, and they were not the Disney World kind of family. They were adventurers, seekers of the untraditional.
“You should consider giving back,” Linda had said, and the only thing Garrett could think to give was the best gift he had ever been given—the gift of mobility.
Garrett and his parents had traveled all over the world, journeyed unbeaten paths, taught English and math to kids in impoverished countries, and gained a deep understanding of different ways of life. They had lived in homestays, met locals in different countries, been enriched with firsthand knowledge of other cultures, but they had never fully immersed themselves, connected themselves, to the lives of the people. This was their chance.
“I wish to go to Cambodia and build wheelchairs for people who can’t walk,” Garrett had announced, and the Make-A-Wish volunteers sat still, smiles plastered, confusion setting in. They had never heard such a wish. How would they go about building wheelchairs in Cambodia? Where would they start? They contacted Globe Aware, a nonprofit that organizes service projects, and Garrett and his parents were on a plane a few months later.
“Orkun,” cried one woman, grabbing the bottom of Linda’s shirt after she helped her from the back of the truck. The woman looked to the ground, tears landing in the soft dirt after running down the length of her hands, pressed together in prayer.
“Orkun,” she cried over and over in her native tongue.
Linda smiled and looked at their translator, Dine.
“Thank you,” he said.
“You’re welcome, you’re welcome,” Linda said over and over, but the woman would not let go.
Garrett watched, the woman’s intensity rushing through him. He wanted to hear her story, wanted to know what happened to her legs. He wanted to hear all of their stories. As a group, they eventually migrated to a nearby hut with a large, open floor, straw above, a table, and nothing else. They sat in a circle and exchanged stories, speaking slowly, deliberately, as the rest sat in total silence, Dine’s voice, his translations, echoes.
As they spoke, Garrett remembered pinning himself between a chair and his bed for hours in the middle of the night. He recalled stares in the halls of his school, disbelief from strangers, running clumsily before falling, learning to live inside his body, a perfect stranger. And then he looked at the faces surrounding him. The faces of people who had spent more than twenty years with broken legs or no legs at all, no means to get around, no “prison with wheels.”
Their prisons were their homes, places they stayed, sitting still on dirty floors—for days, months, years at a time. Their prisons did not include occasional running, the ability to jump from a wheelchair and catch a football. Their prisons did not take away their outdoor adventures, forcing them into air-conditioned homes with TVs, games, and books. They had no books. They had no TVs. They had no air-conditioning, despite cruel, hot summers, no electricity, no light.
When each of the ten people finished telling their stories, Garrett and his parents, the only people from the group who asked to visit each home, each prison, bounced in the back of the old, metal truck as it crawled along dirt roads and into the villages where these people lived. One by one, they visited each home as the setting sun chased behind with fiery reds and magnificent orange. Its persistent push limited their visits to just a few minutes each, but it was long enough to see firsthand poverty that Garrett had only e
ver seen from a distance.
He had once witnessed the slums of Nairobi, consisting of cardboard homes with aluminum roofs, from a highway in Kenya. He had danced with the Hadza tribe—the poorest people he had ever met—admiring their content spirits, appreciating their genuine smiles inspired by living from the land. He had watched the children teeter-totter on tree branches, play in the dirt as though it was sand in a sandbox. He remembered how they only showered when it rained and only ate after a successful hunt.
That was poverty, but this … this was different. This was confinement in their own, dark homes, escape only possible through their minds. Leaving was not an option for them, not without the help of another. There were no cell phones to call for help, nobody to hear their shouts outside of earshot.
Garrett watched as each wheelchair recipient pushed himself or herself freely around the wooden floorboards of their stilted home, and for the first time, it didn’t seem to matter that a box in the corner used as a bed was the only piece of furniture in the room. The dust and lack of windows went unnoticed. They could move, and that was all that mattered.
All these people could see was this newfound freedom, and that’s when Garrett realized just how much he had—how much he always had. Nothing was taken from him. Without his experience, without Dystonia’s firm grip on his life, he would never be standing in the homes of these people, realizing and appreciating every single thing in his life. It was time to start looking at what he had, not at what he did not have. What an invaluable lesson to learn at sixteen. It was his trip, his wish, that taught him that.
Standing in the home of the woman who would not let go of Linda, the woman who was still thanking them, still touching their arms and insisting for them to spend the night, Garrett drank milk from a coconut she had given him and made a decision.
He decided that every vacation in the future would not just serve as a good time, would not just involve exploring and expanding his view of the world. He was going to become part of it—part of the culture, part of the people. His Wish trip opened his eyes to all that he was capable of giving, the difference he had the ability to make. Every vacation would be a “service vacation,” and after his trip to Cambodia, Garrett graduated from high school and his first “service vacation” before enrolling at the University of South Carolina to study international business was to teach English to children in Nicaragua. His second was helping at an after-school program for street children in Peru.
Once Upon a Wish Page 16